I got lost!

On By WendyIn Chronic Illness, Pain9 Comments
Flying Brain by Pixelnase
Flying Brain – photo from deviantArt.com created by Pixelnase

Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me.  Yes they are a part of me, but they aren’t all of me.  I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.

I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself.  I became the sick person.  I stopped trying to be me.  I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.

2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died).  I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred.  It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep.  It’s so hard to explain.  I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick.  I love me…me as a person.

But me as a person was lost.  I didn’t realize it until we came to Tucson and I got so sick.  Not just my normal chronic illnesses, but more and more.  I had a cough that wouldn’t go away…I’m still coughing some.  I finally saw the doctor, and I had bronchitis and Asthma.  I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”.  I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to.  But now, I’m dealing with it every day.  And unfortunately, I had more vertigo attacks in November than I had the entire year combined.  I’ve also been having a huge problem with my GI system.  I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues.  And I’m gaining weight.  I’m back to being 5 pounds from my largest weight.  And that’s way too much for my short body.

It has just been too much.  More illnesses.  More conflicts to deal with.  More being stuck in bed.  I got lost and didn’t even know it.

I was lying in bed recently and realized how much I hate me.  No, I don’t hate me as a person, I actually like the person I’ve become.  Adversity really does create good people.  (and I think I am a good person)  But, me…my body….I hate it.  I’m larger than I want to be, or should be.  I have no energy, I’m sick ALL THE TIME!  I feel my body betrayed me. And I don’t want anyone to see me when I’m ill.  When I do actually get to see someone, I try my best to look my best.  I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick.  I remember one day when  friend came to visit with her 2 children.  I loved seeing them, but I started to feel very worn out and dizzy before they left.  I tried so hard not to let them see.  Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed.  But I couldn’t let her see.  I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends.  But really, I think I’ve lost most of them anyway.  I’ve hidden away.  And I don’t think I could stand for someone to see me really sick.  I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick.  Gaining weight hasn’t helped.  People expect sick people to be underweight.  Instead I’ve gained about  60 pounds.

So, now that I know what has been happening to me, I am determined to get me back.  The inner me.   My blog was very important to me, but I allowed someone to scare me away from it.  I can’t do that.  I have to write and reach out to those who can help me and those whom I may be able to help.  This is such an important part of me.  My art has been an important part.  I wanted to have something I did consistently….but I’ve failed…I need to get that back.  I need to do something that is productive and useful.  I’ve felt like a useless burden for too long.  I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy.  One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them.  (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse).  Foster children hold a special place in our hearts.  The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.

So here’s the beginnings of a plan for me.  Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.

I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month.  So we really need to learn ASL.  We will be starting a class here in Tucson next week.  It is a beginning conversation ASL class.  We will miss the last couple of classes, but feel it will be worth while.  This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class.  (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.

 

It’s so bad…

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

This is the third attempt at writing this post.

So I shall not try to explain things, or guess at things, I’m just going to tell what is happening.

Vertigo!!!  Nearly constant.  mini spins, mid-line spinning, and horrendous attacks.  When I was diagnosed with Meniere’s I was told it could be one of the worst things you can get that won’t kill you, but you may wish it would.

For the past few weeks, I wish it would.

I’m so miserable.  I can’t walk without aid, and then it’s very difficult.  I often can’t move my head without going into a full swing.  Right now I’m having a decent moment, so I’m trying to write.

I’m scared.  I went to a doctor here, and he thinks it’s allergies.  (I’m not so sure, I take 3 different meds for my allergies.)  He put me on steroids and gave me drops to reduce the inflammation.  No infection was seen.  I feel have been worse since starting the medication.  I’m supposed to see him again on Friday, the 21st, but Stuart is calling him tomorrow.

I can’t be left alone.  We are having a hard time.  Stuart needs to leave to go grocery shopping and such, but it’s almost impossible.  He left for a bit last night to shop, and I ended up spinning and terrified.  I called him, but of course I could hear when he answered, I just kept saying help.  He found me in a lump on the floor.  I know it scared him as much as it did me.  I am not prepared to take care of these attacks by myself.  I know I have, but it is terrifying even with help.

We came to Tucson hoping I would feel better here.  Oh how wrong I was!  I never thought I would feel worse!  The same maybe, but not worse.  I’ve seen family once the whole time we have been here.  I haven’t seen any friends.  I’m just so sick.  I often can’t even move my head.

I want to be home where my doctors are.  I don’t know if Tucson is doing this to me, or if it would have happened any way, but either way, I want my doctors!  But now, I don’t know how we would get home.  Riding in a car is torture.  I can only imagine what riding in a plane would be like.  I often can’t lift my head without spinning very fast.

So that’s all I can write for now.

I made a huge mistake, I should never have left NC.  Having family and friends close here is nice, we do have some people we can call on…but this is new to them, how long would the charity last?  At home we don’t really have a support system….but I have my doctors….and that’s important!  If I could have the support from those here, and my doctors in the same place, I would be a much happier person.

Anyone reading this who are close to us now.  Stuart could really use some help….it’s hard for him to admit, but he is overwhelmed by all of this, I can tell.

(also my migraines are back with a vengeance.  I think the Botox has worn off.  It really seemed to help for a while!)

 

 

Grateful during a Rough Year

On By WendyIn Chronic Illness12 Comments
Buddha, by Wendy Holcombe
So much to be grateful for…

Yesterday Stuart and I were talking and I told him I was grateful for many things this year.  He looked at me a but stunned.  Yes, it’s been a rough year.

  • I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
  • I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
  • I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches.  I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
  • I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together.  “Everybody Loved Sandy”
  • I’m grateful my father pulled through a near death experience, and my sister was there to help him.
  • I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way.  I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others.  I’m also grateful that I do not have to send a reply.  It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
  • I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear.  I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear.  I may not be able to hear as well, but with the help of technology I am not deaf all the time.  I’m so very grateful for this!
  • (**a TMI note)  I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region.  I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain.  (thank goodness there are times my head stops spinning long enough to try this.)  : )
  • I’m grateful we were able to come to Tucson for the winter.  The trip out was not as hard as I expected….Thank Goodness.  The time we’ve been here so far has been rough, but I have faith I will feel better and better.  I’m so grateful for the beautiful weather we’ve had so far.
  • With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special.  I tear up just thinking about how very lucky I am to have married this wonderful man.  (I am most grateful for my husband and our relationship.)
Stuart and me, a couple of years ago.
Every time I look at this photo I can feel the love pour over me.
I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)
  • And last but not least, I’m grateful for my friends.  Especially the special people I’ve met through this blog and others.  It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.

There are many other things I could list that I’m grateful for but this post would be very long indeed.  This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.

If you are in the US, may you have a safe and joyous Thanksgiving.  (remember, take care of yourself first.)  I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it.  (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)

May we all remember to take time to think about the things for which we are grateful.

I’m so Grateful for my Emergency Kit!

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I always hoped I’d never need it.  When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it.  On Wednesday, I was so grateful I had that emergency kit!  (TMI -This post contains information that may be too much for some people.) 

The day started off so wonderful.  You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public!  We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat.  (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!)  We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around.  It scared the mess out of me!  First I started to panic, then I felt it was slowing down.  I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills.  Boy was I wrong!  I took the pills and things didn’t get better.  I was getting sick.  Very sick, and the world was spinning faster and faster.  I handed Stuart my purse and asked him to get my emergency kit.  I needed to cool down, and I needed something to throw up in (just in case).  I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard.  This was a wonderful thing.  I needed to cool down my core fast.  We left the restaurant as soon as I could stand.  It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.

I was VERY wrong again!  We drove a ways fairly well, then the spinning got so much worse.  I couldn’t stand the car moving.  I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!”  It was torture.  I was actually screaming before he could get stopped. He stopped.  Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.

We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.

I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).

I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!

I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.

I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.

Wish You Were Here!

On By WendyIn Chronic Illness2 Comments

The trip to Tucson, AZ was a bit rough, but not bad.  The recovery after we got here was much harder.  We arrived late afternoon on Friday, and today is the first day I feel like I don’t need to sleep every moment.

Today is a beautiful day!  Right now it’s in the 70’sF and the high today should be in the mid 80’sF.  At home, Durham , NC, it is in the 50’s all week.  This is the reason I wanted to come to Tucson….oh the weather!  We had a cold front here for a couple of days right after we got here…..I laughed, Stuart was worried about me and the “cold front”, it was in the upper 60’s during the day.  It did get in the 30’s late at night, but I wasn’t out during those hours.

The second day we were here I walked outside to get some fresh air, I saw the prettiest bird!  It was the reddest red I’ve ever seen!  I looked it up and it’s the Vermillion Flycatcher.

Vermilion Flycatcher – photo from http://www.focusonnature.com

That’s one red bird, isn’t it?  I was lucky to see it, normally it has migrated by now.   Right after seeing this lovely bird I saw a hummingbird, actually, he saw me first and was quite interested.  He buzzed by my head, then came back and hovered about a foot or so from me and just looked at me.  It was a brilliant iridescent green.  What a lucky day!

Today I have been sitting outside enjoying the sun.  I know it won’t be this nice all winter, but there is much less barometric pressure change here than there is at home.

I have much more that I planned to say, but I have had a bit of trouble with my email.  I just found out that one of my email addresses that I have imported to my main email address, so I can read everything from one place, wasn’t being forwarded.  This email address is a pretty important one to me, and it appears it hasn’t  been forwarded for months.  I wondered why I wasn’t hearing from some people.  Now I have about 1500 emails to go through.  I’m sure I’ll get tired and start deleting many without even thinking about it….so if you have written me on my “name” email, please forgive me for not getting back to you, and try again.

One more thing about email…well commenting on posts actually…On our ride out here I read some of your posts and commented on them, I don’t think they posted.  I’m not sure I will be able to go back and comment on everyone’s posts.  I’m sorry.  Please know I was thinking of you on our way across the country.  (FYI…I-40 is a boring route)  I read many posts, and even tried to keep in touch.
Some have asked about how Max did on the trip.  He was very good.  I was afraid he wouldn’t settle down since Sandy wasn’t with us, but he did.  The only time it was evident that Sandy was a real help with him, was when we’d try to leave the motel in the mornings.  Max would hide!  When Sandy was with us, Max didn’t want to be left without his dog, so when Sandy was ready to leave, so was Max.  But for the actual ride in the car, Max was great.  He meowed quite a bit the first day, but he settled in and slept most of the time.  Oh the life of a spoiled cat.  (he got tuna every day to coax him out of the motel, I’m surprised he hasn’t been pestering us for tuna since we arrived!)

So I to all I hope to be posting more and more about our trip and how it is affecting my illnesses.  (I should say that on the drive here we mostly ate out….way too much sodium!  So for the past few days my tinnitus has been louder than ever, and I’ve been very off-balance.  I’ve been drinking lot’s of water and really watching my sodium intake, so today I’m feeling much better, but still not hearing as well as I was.)

 

Going…Going…Gone!

On By WendyIn Chronic Illness10 Comments

We are finally getting on the road to Arizona.  We leave for Tucson tomorrow…so no we aren’t gone yet.

and neither is that stupid cold.  I’m sure the virus is gone, but some of the symptoms are still here.  Mostly a cough.  Oh how I hope it’s gone before we get to Tucson, the last time I was there I had a cough from a bad cold, people thought I was dying….or very contagious.  I don’t want hubby’s family to think I have a chronic cough…for years!

So what is Gone?  My hair.  Yes, I had 14 inches cut off yesterday.  You read right, 14 inches!  Stuart took pictures, and I promise I will post them, as soon as I can get them off his phone.  We are just so busy trying to finally get out of this house and on the road, that’s on the back burner right now.  (my hair is now just above my shoulders…or right on them)  I look like a different person!

I know I’ve been missing in action for a bit.  I’m sorry.  When I’m feeling icky, I don’t really like to be on the computer.  I was feeling overwhelmed every time I looked at my email.

Today I just wanted to touch base with my lovely friends….and anyone who happens to drop by for a read.  I’ll give you the update from the doc and audiologist on my Cochlear Implant soon.

This overwhelms me too.  so much I want to share, but what to tell first?  I don’t want you to have this long post to sort through, but do I tell you what has happened most recently, or what happened before that I still haven’t shared.

I guess it will just come as it comes.  If I could just get back on track with posting I wouldn’t have this problem.

sending a wish for a happy day to all

A cold is not cold, so why do they call it a cold?

On By WendyIn Chronic Illness5 Comments

Opps I forgot to Publish this…*smiles*  So it’s a little out of date, but much of the info is still good.   This post was more of a Freeform post….I just sat down and wrote, if I felt like it or not and didn’t re-read or edit so please forgive the errors that I’m sure are in abundance…..so…here’s for a bit of out dated news   (I’m pretty much over my cold, it’s still hanging on with Stuart)

You will not believe this, but I thought I finally published this yesterday! I looked today…no it was not there.  I think this post is haunted….read at your own risk.

For the past week I’ve been taken over by the cold virus.  (you aren’t normally cold when you have a cold…so where did that name come from….and no I really don’t care enough to try to look it up…just pondering.)

My dear sweet husband that does so much for me caught my cold around day 4 of my dreaded mucus maker.  He is such a trooper.  I can look look at him and tell how bad he feels and how tired he is, but still he would take care of me.  I will admit, I have not been able to walk very well since I caught this virus, my ears do not like a head cold!  I started feeling  better a few days ago (ok, maybe 2), but when I’d try to walk around I’d start spinning.  Back in bed for me.  So Stuart has been left to nurse his own cold and take care of me too.  We’ve had a lot more takeout this week.  Honestly, for me, just put my meds close enough and feed me (a lot, this cold has made me ravenous….strange for me when I’m sick!), and I’m ok.  I have been sleeping more than I thought possible.

Oh, I must tell this story.  I always thought I was very careful with my medications….but I did a really stupid thing the other day.  I have my Diamox sitting by my bed because I have to take one as soon as I wake up to keep my cerebrospinal fluid regulated.  I reached for it and took a pill….then thought, that pill was way too small.  I then really looked at the pill bottle.  My prescription for Ambien had been left on my nightstand, instead of in the drawer, and I took one of those.   You can guess what happened, I went back to sleep and slept all day!  But first I decided I should try to do a couple of things….like answer some emails….not the best idea.  My husband also told me of one thing that happened that I don’t remember at all.  Yes, I thought I had always been very careful with my medication, but I will me much more diligent now!

As a result of this cold I shared with my hubby, we have decided to post pone our leaving for Arizona by a week.  We should be leaving on the 3rd now.  The cold just put us way behind in getting things ready to go.

It also postponed my hair appointment.  So it’s still long.  And I may keep some length.  The test results didn’t show any reason that I should be losing my hair, and my doctor said I may want to see a dermatologist.  But she also put me on Biotin.  I changed my shampoo and condition to one that is supposed to give you more lift or something, I got a real boar’s hair brush, and I’m taking the Biotin.  Much to my surprise, I looked at the back of my hair this morning and I couldn’t see scalp.  I asked Stuart and he said he didn’t see the “balding” spot I’ve had for a while now.  My hair seems to be getting thicker.  So….my hair appointment has been changed to Halloween.  We’ll see what happens.  Stuart said it could be a horror, or perhaps magical.   (the magical suggestion came after I told him he was mean and scaring me.)

I’m a bit disappointed we are leaving later now.  I love Halloween, and I’m not prepared for it. The house isn’t decorated, I have no costume, I don’t have the treat bags put together, and would need to purchase more stuff.  I think our house will lose its reputation this year.  (the first year we lived here we had less than 20 kids Trick or Treating….last year we had about 100, they come from different neighborhoods to come to our house….it has kind of gotten a little out of hand….but I love it!)   But I’m not prepared!  This year, the kids will just get candy.  (normally, they all get treat bags…made for different age groups…with things like pencils, stickers, Play-doh, glow sticks, temporary tattoos…..all kinds of things….plus they get candy.)  yes, my house is the house to come to!  We often have a grave yard set up with a fog machine….oh I love Halloween.  The decorations are just so cool.

Yes, I’m rambling a bit.  I’m still tired from my cold and when I’m tired I ramble….or sleep…..I think that’s next.   No wait, I’m hungry!

BTW:  I always buy my treat bag goodies right after Halloween for the next year, I don’t spend a lot….and it’s really worth it to see how the children love them.

Being sick when you are Chronically ill.

On By WendyIn Chronic Illness5 Comments
image by Fukari on deviantArt.com

People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.

Even a cold can knock me for a loop.  There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days.  What was that?  At least it didn’t last long.  I keep thinking it’s probably allergies.  Now, I feel like I have a cold…Day 3…perhaps I really do.  But ragweed is really blooming here and it’s EVERYWHERE!  So maybe??

It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick).  Being sick, when you are already sick can cause all sorts of trouble.  My ears are stuffy…not a good thing.  I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark.  This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor.  I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall.  I called Stuart and he saved me.  It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall.  He was a dear and stayed right with me.

I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.

I can say my head has been feeling much better.  The day before I started feeling sick, the day was overcast and just yucky.  The type of day that normally sends me to bed with a category 8 migraine.  I actually went out that day!  I did not have a migraine!  Unbelievable.  So maybe the Botox is working..(crossing fingers and toes).  What ever is causing me to have less headaches I’m happy.  This week has been nice….as far as the head pain goes.  : )

All of this brings me to another question.  Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses.  If you have this problem, how do you tell the difference?

For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance.  When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have.  or was hit with cross contamination.  But, what if it’s really a stomach bug, or worse…food poisoning?  I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.

Or with my ears.  I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection?  This has happened numerous times.  I end up getting a very bad ear infection because I think the first signs are just my normal stuff.

I don’t really expect any answers.  I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard.  The thought of going to the doctor and being told it’s nothing just makes me cringe.  (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal.  (doesn’t that sound strange, that we have symptoms that are just every day normal things.)

A little update on other things.

I was supposed to get my hair cut today, but it has been postponed until next Friday.  Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet.  She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait.  In the mean time, I’m getting my hair cut to make the thinning less obvious.  (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.)  So next week, I should have photos of before and after!  I plan to get about 10 inches cut off.  I’m donating it to Pantene Beautiful Lengths.

The progress with the CI (cochlear implant) is going well.  I’m hearing more, but things still sound a bit tinny.  I hear best with the CI and my hearing aid at the same time.  I’ll see the audiologist and Dr. K. again before I leave for Tucson.

We leave for Tucson, AZ on the 27th.  I can’t believe it’s almost here.  It’s been months away for so long, now it’s just around the corner!  So much to do…actually, my darling husband has done almost everything.  He’s a wonder!

One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows.  I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right.  I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that.  It was strange to say, oh it’s just the Botox.  (she already knew about the treatment).

I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some.  To get it out and not hide it, to let people know how very much I’m still grieving.  The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect)  Stuart said the wrong thing.  He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”.   No shit!  Well, him saying that actually did help, I got so mad it him it snapped me out of it.  He really felt bad…just awful really.  I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me.  She always will be.  As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape.  I do hope I’m through with the complete breakdowns.  No fun, and Stuart is right, it doesn’t help.  It actually hurts me physically, then I’m hurting everywhere.  My therapist suggested some art about Sandy.  I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished  (I’ll take photos some time, and you can see the great unfinished works of W. H.)

I’m sure I’m leaving something out….but there is always next time.  : )

Not Just for Wrinkles….

On By WendyIn Chronic Illness, Migraines12 Comments

Botox is now used to treat migraines.  I know you saw me post that I was getting my shots on October 3rd….and I did…more in a moment.  However, isn’t it amazing that Botox will help migraines?  Or at least I hope it will.  I’ve been reading about it, and it seems to, I know someone who has been getting the shots for a while now and she has had wonderful results.

Botox is for people who have tried many other treatments but still have 15 or more migraines a month.  In trials it prevented about 9 of those headaches.  Having half as many migraines as i do now would be amazing.  However, I also read that people who took the placebo reported having 7 fewer migraines a month….a difference of 2…not so great.

There are a number of side effects you could have, but I haven’t noticed anything.  On the Allergan site (they make Botox, I found that funny since they are known for contact lens stuff) it says, “It may take several weeks to see a response. In clinical trials, patients showed a response at their 4-week evaluation. After 2 treatments (at 24 weeks), BOTOX® was proven to reduce headache days each month.”  I was told by my doctor (and I know others have been told this too by their doctors) that you will notice a difference in 4-7 days, normally about a week.  I hope the doc’s right, I’m ready for relief. Also, considering I won’t be able to get my second injection for about 5 months I might have waited until then for my first treatment if it takes 2 treatments to be proven to reduce the number of headaches each month.   (We will be in Tucson, AZ for the winter, so I can’t get my next injection until March 7th).

I’ll keep you updated on how my headaches are doing.  Allison, from Taking Life for a Spin, recently had her first treatment and after about a week she reported she couldn’t lift her eyelids.  You can check out her story here: Unresponsive Eyebrows.

So, how did the treatment feel you ask…what exactly did they do???

I had 31 injections….here are photos from the Allergan site showing the injection sites.  One of mine was a bit different, Cochlear Implant in the way.

Forehead injection sites
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites sides.
This was a bit different on my left side due to my CI.
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
injection sites Occipital
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites back of head and shoulders
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/

What did it feel like?  My doctor told me it would feel like little bee stings.  Well I’ve only had big bee stings so it was much less painful that I thought it would be.  The needles are tiny, but the solution does sting a bit, and some of these areas were pretty sensitive on me, but it wasn’t bad.  I’d do it again.  : )   It went really quick, my doctor really knew what she was doing, just a few minutes and it was done.  I spent much more time waiting on her to come in the room.  : )

So like little bee stings, yeah, but remember I got stuck by the whole hive!  hahaha.  No…I promise it wasn’t bad at all, it was nothing like some of the other procedures I’ve had!!

After I got the Botox injections, I also got an injection for the migraine I had right then.  (one that had been going on for nearly 2 weeks)  So after my visit we got a bite to eat and I came home and slept for 6 hours!  What a way to spend the day…a good way actually.  The shot in the butt helped my head pain, and he shots in my head will hopefully help me to have less head pain, and I had a good 6 hours of sleep straight through.  I did feel like I wasted the day, then I thought, “What else would I have done?”

Oh….I forgot the funny part of the story! But beware…this is Way Too Much Information!

I had been having cramps and all the symptoms of having a period, with no period, for over a week.  That morning I woke up and felt fine, I thought….hmmm, guess I’m not having a period this month.  (I am 49, I’m expecting to start skipping some periods)  So I got dressed, and left for the doctor’s, we get half way there and I’m hit with a horrible cramp.  I thought….no, no, no…I didn’t bring a thing.   Of course, when we got to the office I go to the rest room and yep, I started.  Well, If you are a woman, I’m sure you’ve all had this happen at some point in your life, and what do you do?  No dispenser on the wall….so…Toilet Paper to the rescue…and pray it’s good enough for the time being.  So I went and waited and waited for the doctor, and had all my shots and 2 hours later we were leaving…and I forgot, yes, I forgot about my makeshift protection.  So we go out to eat lunch, and go home and I walk in the door and remembered.  How could I have forgotten?….well the shot could have had something to do with it, but, but, ewwww.  Luckily, it wasn’t that bad.  But I will never again assume I’m not having a period!!   Lesson learned!

A Realization

On By WendyIn Life13 Comments

For months now…oh about six…I haven’t had the desire to do much.  Blogging always helped me deal with things and I’ve found support here I never thought possible…but I just haven’t felt like it.  I’ll think about blog posts, write them in my head, but then in the day I don’t get out my computer and get in touch with the world.  I keep thinking I’m snapping out of it, and I am better…and I do think I’m pulling myself out of this depression now, but it was there sitting on my shoulder, whispering in my ear “What’s the point?”

It’s almost 6 months since Sandy died, and I’ve been consumed with grief and guilt.  I know I don’t have a reason to feel guilty, but all the “should have, would have, could have” questions kept swimming around in my head.  Those kind of questions don’t do any good at a time like this, but they’ve been surrounding me…all the “What if’s…”

Sandy….Happy Dog!.

I still expect to see her, and occasionally, out of the corner of my eye, I could swear she was there.  I will feel her on the bed, and nothing is there.  There have been times I could have sworn I heard her.  (Now I wonder how many times I heard noises and thought they were her and they were something else?)

A lot of people would not understand this deep grief I feel for the loss of my dog.  But she was more than just a dog to me…she was a constant companion for 19 years, my Baby Girl, my Sugar Plum Fairy…or as Stuart would call her, our “Stinky Dog”.  No Sandy wasn’t a Stinky dog.  It is a term of endearment from my husband, if he makes up a little song about you and it says you are stinky then he must love you dearly.

Stuart and (his Stinky Dog) Sandy (taken early April 2012)

Because of this lack of understanding, and the feeling within myself that I shouldn’t feel like this still, I’ve been feeling very alone with these emotions.  I hid a lot of it from Stuart for a while, but recently I haven’t been able to.

Two nights ago, I had a complete breakdown.  Nothing sparked it, nothing.  I was just about to doze off, and it started.  I ended up crying (read sobbing uncontrollably) for almost two hours.  Since then I have felt a release.  I’m still crying over her, but something broke during that night of gut wrenching sobbing.  I feel freer from the guilt than I have, I feel like I can move on….that doesn’t mean I’m forgetting my dearest Sandy Girl and everything she means to me, but I hope it means I can begin to see the sun again.  I’m kicking that little guy off my shoulder, he will no longer be able to whisper those disparaging words to me.  I love Sandy, and always will.  I know I did the best I could for her, even if i do question that sometimes.  More so, I question if the vet did the best she could have done for her, but I need to let that go too.  (However, Max has a new vet now.)

Sandy and Max checking on me in bed.

 

I know she was 19 1/2.  That’s amazing I’m told.  But just days before she died she was chasing the cat, curling up with me, and just such a happy dog.  I remember how every time she ate her dinner she wagged her tail the whole time.  I need to think more about the good memories, and remove the shroud that has been over me holding in just the memories of her last days.  Sandy brought me too much love to dwell on the tragedy of her death.

I won’t make promises that I will be here more often, but I think I will be….I need to get back to my friends, and managing my life, instead of allowing it to manage me.

(there may be many errors in this post, I just can’t read it again right now.)